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Friday, 4 July 2014

Developing a Charter for Research

The following notes represent some very initial thinking and will probably go through major changes.

The NIHR Clinical Research Facilities (CRF) held its 10th Annual Conference in Sheffield (Twitter #crfconf14).

I was invited to give a very short presentation about the work in the Clinical Research Network and to consider how we might move towards a Charter for Patients.

In writing these notes I decided not to start from the 'patient, care and public involvement' perspective. I have chosen instead to think about improving research and a set of principles that we might have in common.

I found the Athena Swan website

http://www.athenaswan.org.uk/content/history-and-principles very helpful.

The Context

The public and clinical research working together to improve research - the policy, process, experience for the improvement of treatment, care and practice. Partnerships taking place within an appropriate, responsible, ethical and regulatory framework.

The Principles

That research is viewed as a process done WITH the public rather than TO the public

Research is for everyone and in all aspects of its work reflects the diverse richness of our communities

Research forms a standard part of the patient pathway with every clinical encounter offering an opening to assist research.

Research - people and environments are friendly, approachable and supportive with high quality information and advice

Patients and their families are encouraged and enabled to ask about research and find out about the opportunities to help take part and get actively involved

Patients, families and health professionals able to develop their research literacy to empower them take part in shared decision and better health

Learning, developing and sharing their understanding and knowledge of research is central to good practice and innovations

Research processes and structures should be open and transparent with choices to inform and influence